Hi. Please can someone help me? I have been on Google all morning but struggling to find anything. I have SPMS and first presented/diagnosed 5 years ago at age 40. The disease has progressed alot faster than I expected and I had to take ill health retirement from work 2 years ago due to cognitive impairment. I have been experiencing (what I thought was) The MS hug for several months. A routine blood test by my GP says that I have pernicious anaemia? apparently I have no intrinsic factor and my GP has been aware of this for 3 years but it has been somehow overlooked? My B12 levels were dangerously low at 132 (should be over 400) so I have just had the first of 5 emergency b12 jabs. The nurse at my GP tells me that these levels are seriously low and she has urged me to contact a solicitor and complain to PALS? Apparently - severe/long term pernicious anaemia has the same symptoms as MS and has been know to be mis-diagnosed as it causes brain damage? Although I did have the required amount of lesions and a positive lumbar puncture when I was diagnosed. My head is now in a spin? is it possible that i’ve never had MS and my brain damage is the result of long-term severe pernicious anaemia?
Firstly, to reassure you somewhat, I do not think it likely you have been misdiagnosed.
For reasons not yet fully understood, B12 deficiency is more common in people who also have MS. It’s not clear whether it’s an effect (we might be using more, trying to repair the damage) or a partial cause. And symptoms can be similar.
Nevertheless, although you almost certainly DO have MS, it’s no excuse for failure to treat the B12 deficiency, which you also have.
Yes, the symptoms are similar, so it’s impossible to know just how many you would still have had due to the MS anyway, and how many have been caused or worsened by an untreated deficiency.
For peace of mind, you may want to query your diagnosis, just in case - but I think it’s likely to be sound. But where you almost certainly do have a case is the inexplicable failure to treat the separate condition.
What made them realise now? Is it only because you complained of the “hug”? And has your GP actually confessed that he/she knew about this three years ago? It might be worth asking to see your notes (which is your right) to find out exactly when (or if!) the deficiency was first mentioned, and if so, whether there was a treatment plan. If not, why not? Or if there was, why wasn’t it carried out?
Complaining to PALS, the most you will get is an apology - and hopefully some revision to procedures, which make it less likely to happen to anybody else. That’s all some people want.
If you are thinking of pursuing monetary compensation, you’d have to consult a solicitor.
I’m sorry it has happened, but hope this helps.
We had a very interesting long series of ‘post’ on B12 last month. We fortunately had a couple of members who are very knowledgable on B12 and PA.
My interest in B12 - started a few years ago after watching a BBC programme about a Dr Chandy who was treating many of his patients with B12 injections. He - like many others feel the level of 400 is much to low - and the routine B12 blood test given by the nhs - very inaccurate. l googled B12 deficiency - and saw the site ‘Could it be B12 - An Eperdemic of Misdiagnosis’ - l have bought the book of the same name from amazon. My GP~ still works on the old blood test and would not look into finding out what the ‘active’ b12 level is.
So l was thrilled when the subject came up on here in August. l think it was Karen - and someone else who started it and it got lots of replies. Through them l found a B12 spray of methylcolabalim which is as good as the injections - so l am now self-medicating. You can not overdose with B12 - as the extra is flushed away. But of course you can be deficient - dangerously deficient - even when your blood test results say you are ‘within the nhs levels’.
Do look back on the posts to find it - and if l can l will bump it to the front.
The spray l have is Pure Advantage - and l felt improvements in energy etc straightaway. B12 deficiency mimics MS - as it also damages myelin.
Read up all you can - lts a shame in this day and age that you need to be your own expert - but when its your own health at stake you must.
A couple of things that may reassure you - while B12 deficiency can appear like MS, it causes symptoms that are similar to progressive MS and not RRMS (basically there are no remissions with B12 deficiency) and people with B12 deficiency do not tend to have positive LP results.
So your deficiency may well have added to your MS, but it is unlikely that you were misdiagnosed if you were diagnosed with RRMS.
The good news is that B12 deficiency can be treated. The bad news is that something must have caused yours. I believe that the most common cause is a problem in the digestive system, so if you’ve been having stomach problems, it would probably be a good idea to see a gastroenterologist.
As far as PALS goes, I really do hope that you will complain. Pernicious anaemia is no laughing matter and it is absolutely terrible that nothing was done about it. If something had been, it might have prevented permanent damage to your nervous system! It’s negligence, and no possible excuse for it
I hope the injections get to work really quickly and that you feel masses better for them.
I know this is an old thread but I hit on it as I was searching.
There is a recent clinical review out: BMJ September 2014 Vitamin B12 Deficiency Hunt et al and it’s causing a stir.
(By the way, remissions were recorded with B12 deficiency or PA as it was then known, as far back as the late 1800s so that information is wrong. And I don’t know any B12 patients who get tested for LP)
Right, the upshot of the review is that a lot of pieces have been pulled together. B12 deficiency causes DNA dysfunction which may or may not result in changes to the blood. So, what you have to forget is that B12 deficiency is a blood condition which might result in neuro damage. It works the other way round. The serum B12 can be up to 94% wrong and is at least 80%. If B12 deficiency goes untreated for more than 6 months in a patient with neurological symptoms then it is likely that some of these symptoms will remain ie they are permanent. B12 deficiency is not always treatable. There is no evidence that neurological problems are resolved simply because blood levels are brought into the normal range. 6% of patients will have permanent neurological residual disability no matter how much B12 they have.
The article doesn’t say it, but I did see a very clear statement on another research paper tonight which said it could result in quadriplegia. Not surprising really since they are testing to see if patients levels are okay with a test that is between 80 and 94% wrong and then trying to use the same test to establish if cellular damage is repaired - which is ridiculous and you can see in the responses section one of the researchers states there is no blood test able to evaluate this.
Basically it is not what doctors thought it was - an easily treatable blood condition with symptoms which could be easily reversed.
…And, just as an aside, in the US B12 deficiency misdiagnosed as MS is one of the top 5 medical law suits.
The link to the BMJ abstract is here http://www.bmj.com/content/349/bmj.g5226 and if you want the full might I suggest you tap PDF into a search before the title and see what it throws up.
I was going to edit my post but I don’t think I can…
When it comes to the word ‘mimics’ I’m not quite sure what people mean, it makes it sound like a pretend disease. I’m not having a go, Campion, I’ve just seen it used so often and I still don’t know what the implication is.
Anyway, PA was first identified as an anaemia back in 1848. But, most of those cases were anaemia - so it all got a bit tangled up. A couple of decades later it was tied in with subacute degeneration of the spinal cord but the PA title stuck.
Around the same time Charcot started his work on MS but where he looked at the brain the PA people looked at the spinal cord. How much confusion has been between the two - I don’t know. But in the 1920s because the treatment for PA cured the ‘anaemia’ part of the illness very quickly, it became known as an illness which was ‘quickly and easily treatable’. What they forgot was that the neurological problems took intensive treatment and time and in many cases it could not be reversed because damage to the spinal cord was permanent.
I don’t know how much cross over there has been because they have been getting B12 deficiency wrong for so long - treating it primarily as a blood condition.
Anyway, one doesn’t mimic the other. They were both identified around the same time and there are, most certainly, cross over symptoms, and there certainly have been cases where one has been mistakenly diagnosed as the other.
Hopefully this clinical review will start to pull together a few more pieces as doctors become more aware of what they have been missing.